Information for THL Biobank sample donors

Biobank consent refers to the permission given by a sample donor that allows the use of biological samples, and the data linked to them in biobank research.

THL Biobank does not collect new samples from volunteers—samples are only collected in connection with research projects. For this reason, biobank consent cannot currently be given electronically.

The storage and use of samples and data in biobank research is based on the voluntary consent and approval of the sample donors.

A sample donor may at any time withdraw their consent and/or object to the processing of their personal data in the biobank by submitting a consent withdrawal form. The withdrawal can be made using the designated THL Biobank form or in any other written form. Ending participation in the biobank has no negative consequences for the donor.

If you wish to withdraw your participation, fill in the THL Biobank consent withdrawal form. With the same form, you can also proactively prevent your samples and data from being transferred to THL Biobank and used in biobank research. Withdrawal of consent and the use of the right to object apply only to THL Biobank.
Consent withdrawal form

THL Biobank primarily recommends using electronic services when returning the completed form. Log in to the Suomi.fi service using strong authentication and attach the completed form to your message in Suomi.fi.

Instructions for submitting the form electronically can be found further down on this page.

You can find out whether THL Biobank holds any of your samples or data and in which studies they may have been used. Your samples may be in the biobank if you participated in a study and gave written consent for the transfer of samples to THL Biobank. If you have participated in population studies or research investigating the causes of diseases, your samples may also have been transferred to THL Biobank based on the public notification process permitted by the Biobank Act. THL Biobank does not collect, nor has it received any diagnostic samples taken during patient care.

Under the Biobank Act, everyone has the right to request information on whether a biobank stores samples and data concerning them. If you want to find out whether THL Biobank has your samples or data, you can submit an inquiry using the designated form. This inquiry is free of charge.
THL Biobank Inquiry Form

THL Biobank primarily recommends using electronic services when returning the completed inquiry form. Log in to the Suomi.fi service using strong authentication and attach the completed form to your message in Suomi.fi.

Instructions for submitting the form electronically can be found further down on this page.

THL Biobank recommends using Suomi.fi Messages, which ensures secure submission and requires strong authentication. You can submit electronically:

• consent withdrawal form
• inquiry form regarding the use of your samples

Steps for sending the forms (summary):

1. Fill in the form on your computer and save it.
2. Log in to the Suomi.fi service
3. Select Messages → Write message.
4. Select Finnish Institute for Health and Welfare (THL) → Registry Office (Kirjaamo) as the recipient.
5. Write "THL Biobank" as the subject line.
6. Attach the completed form and send it.

The message is delivered to THL and processed by the biobank.

THL Biobank responds to inquiries electronically. Please remember to enable electronic communication in Suomi.fi to receive the reply.

Alternatively, you may send the signed form free of charge by post to:

THL Biobank
Tunnus 5022238
00003 Vastauslähetys

THL Biobank will verify the requester’s address information from the population register before sending a response.

THL Biobank provides samples and data for high-quality medical research. Below are short descriptions of research projects approved by the biobank in recent years.

Effectiveness of Celiac Disease Screening in Finland

Principal Investigator: Juha Taavela, Tampere University

The study investigates the impact of celiac disease screening in the Health 2000 and 2011 study cohorts.

Significance of MKI-67 Gene Malfunctions in the Immune System and Disease Progression

Principle investigator Jonathan Bolen, Ludwig-Maximilians-Universität München

The study explores how the loss of MKI-67 protein function affects the human immune system and related diseases. The focus is especially on the role of MKI-67 in the function of white blood cells—such as B and T cells—and identifying potential immune disorders, such as weakened B cell function, susceptibility to infections, or autoimmune symptoms.

The project also utilizes previous findings from mouse models and investigates how MKI 67 deficiency influences immune response regulation and B cell maturation, aiming to link these findings to human immune mediated diseases.

Evaluation of the Accuracy of Genetic Risk Models Using FINRISK Gene and Health Data

Principle investigator Bermseok Oh, Fortuna Helix

The goal is to evaluate and validate the predictive accuracy of 37 polygenic risk score (PGS) models for various diseases, including cancers, cardiovascular diseases, immune disorders, metabolic diseases, gastrointestinal diseases, mental health disorders, and neurological disorders.

These models were previously validated using the UK Biobank dataset, and the study now tests their performance in an independent Finnish FINRISK dataset.

Metabolic Profiles in Mental Health Disorders and Related Somatic Diseases

Principle investigator Elena Toffol, University of Helsinki

People with mental health disorders often have more somatic illnesses than the general population. Significant differences also exist between genders in the prevalence of various mental health disorders, though the underlying reasons are largely unknown.

The project aims to describe and analyze metabolic changes underlying several mental health disorders and to examine whether they predict depression, cardiovascular diseases, metabolic syndrome, or self harm. The project also investigates whether these metabolic factors explain gender differences and to what extent hormonal contraception predicts future health outcomes in women.

Alzheimer’s Disease Progression Study

Principle investigator Aarno Palotie, FIMM

The aim is to study the progression of Alzheimer’s disease by analyzing phenotype data, laboratory measurements, genetic information, and potential new biomarkers such as imaging data and highly sensitive plasma biomarkers. This combined approach can improve disease staging and prognosis.

In the future, these results may help identify at risk individuals for clinical diagnostics and risk assessment.